Ruminations

A Mother's Challenge

"No regrets. I wouldn't change a thing. And I won't wonder about anything."
"You do anything for your kid. We were looking for quality. And the Mexican treatments were less invasive and gave her quality."
"I love all my girls for different reasons. I don't love any of my other girls for the same reasons I love Kaisy."
"She was the courageous one. The one who made me come out of my box. I said: 'You're doing it again, Kaisy. Making me do something I never thought I would do'. Then I busted out laughing."
"The funeral director looked at me like I was nuts."
Melany Knott, 40, mother of four girls, Mount Airy, Maryland

Kaisy Knott sits at Starbucks in August 2017, before heading to Mexico for experimental cancer treatment. (Jason Andrew/The Washington Post)

Daughter Kaisy, 13, the youngest of Melany Knott's four girls, turned to her mother and told her: "Mom, I can't do this anymore" on September 9, twenty-one months after she had been diagnosed with diffuse intrinsic pontine gliomas (DIPG) a dread cancer known to be aggressive, inoperable, incurable: A 100 percent lethal brain cancer. Kaisy was given eight months, tops, to live. "It felt like I was being stabbed in the head", explained Kaisy at an earlier time.

A day later, Kaisy uttered the word "Mom", and then she died. Two days later her mother arrived at the funeral home, fearful, distressed, forlorn and desolated. Melanie Knott suffered from a deep aversion to the cold, irreversibly final aspect of a dead body. Now, her beloved youngest daughter was that dead body. And the mother had to muster the courage to overcome her fear for her daughter's sake; so she could braid her hair, as Kaisy loved it to be done by her mother, for the very last time as she lay in her coffin.

The plan was that Kaisy was going to have her hair braided that week as she prepared and looked forward to attending her first day of school. That was back a few days earlier when she felt fine, her usual rambunctious self before her diagnosis, before she died on September 10. Kaisy had a Facebook following of thousands; her page titled Kick Butt KK. After Kaisy's diagnosis of a fatal brain cancer the doctor told her mother: "go home and make memories".

That's just what they did, but not quite in the way the doctor and conventional medicine might have imagined they would. Setting about raising the required funds, the rural, farming family auctioned off goats and guns, chainsaws and other implements usually found on a farm. They ran fundraisers at the country fair, and they used up all their savings, including the carefully padded funds for their other daughters' education -- and they worked double shifts.

They had decided to take Kaisy to Mexico, to a medical clinic specializing in untested treatment for cancer. A mystery treatment for which there have been no published studies and for which the ingredients of the customized chemotherapy cocktails have been maintained in absolute secrecy. Miraculously, Kaisy became animated, swam in the ocean, went kayaking, rode roller coasters and showed her prize hog and steer at 4-H competitions.

Kaisy Knott and her mom, Melany, waiting at Reagan National Airport for their plane to Mexico, where Kaisy is undergoing experimental treatments for a lethal form of brain cancer. (Jason Andrew/The Washington Post)

The dramatic change in Kaisy's condition became public knowledge and she became a celebrity figure among others in similar medical conditions, leading other families to fly to the Mexico City clinic from Norway, London, Italy, Australia, to themselves take part in the experimental, controversial cocktail of drugs injected into children's arteries to buy time, precious time to continue living.

Kaisy and her family went off on holiday junkets to "make memories". The original eight months that Kaisy was given left to live by the diagnosing medical community in the U.S. came and went, and Kaisy felt great, went swimming, paddle-boarding, everything she wanted to do. When President Trump signed the Right to Try Bill, allowing people with life-threatening illnesses to have access to experimental treatments and bypass the U.S. Food and Drug Administration for approval, Melany cheered.

Kaisy, whose life was being enriched when her body responded so positively to the unknown cocktail of drugs from the Mexican clinic, loved having her mother -- who lived her entire life in rural Maryland on farms, companion to hogs, horses, steers and chickens -- accompany her everywhere. Her fearful mother was persuaded to get on a roller coaster with her eager daughter, to go to the beach, to take time off work, to take air flights, leave the U.S. to rent an apartment in Mexico.

Each of those treatment cycles at the Mexican clinic came with a price tag of $33,000. A total of $695,000 was spent altogether in the 21 months when Kaisy's life was prolonged, her symptoms of medical duress relieved so she could feel her normal ebullient self and savour those adventures with her mother. Melany Knott figured it out that they spend about $1,100 for each of those days that preserved her daughter's life just a little longer.

Worth it. Every penny.